Parent Manual

PARENT RESOURCE GUIDE

Planning for Services After School

Parent Resource Guide Table of Contents

PAGE #

TOPIC

3

Introduction Letter from Dr. Gary Edwards

4

Planning Today for Tomorrow

6

Education Services Planning

10

Employment Planning

18

Health Care Transition Planning

Planning for your Childs Health Care Transition

Health History

Visit to Doctor

Medication Listing

27

Needed Documents

33

Legal Transition Planning

Legal Guardianship

Establishing a Special Needs Trust

Letter of Intent Document

How to Find the Right Attorney

50

Understanding Government Services/ Programs

for Adult with Disabilities

Social Security Information

Records to Keep/ Obtain for these services

What services are available? (Day/Work Programs, Residential/ Housing Programs, In-Home Services/ Personal Care, Transportation)

Dept. of Mental Health/ ADRS Services Flow Chart

Steps to be placed on a waiting list to get adult services

80

Helpful Websites/ Resources

Dear Parents,

This Resource Guide is to assist you as you plan for your childs transition from school to adult services. It is important that you begin planning now to assure that services are available when your child leaves school.

Adult Services are different from the services that you receive in school. One of the major differences is that just because your child is disabled, it does not automatically guarantee he or she will have a program they can enter. Many programs have waiting lists, and it is important that you advocate for your child.

You must begin the process of advocating for your child when they are in high school. If you wait till the last year, then he or she will be home sitting on the couch with nothing to do.

This guide is a reference to guide you along this effort, but it is up to you to make sure that you provide the state or local agency the information requested and that you let the agencies know the services your child needs. This guide will also provide you a place to keep information regarding your child. Maintain this information as up to date as possible. You will be asked for the same information again and again.

Good luck on this journey!

Gary Edwards, Ph.D.

Executive Director

United Cerebral Palsy of Greater Birmingham

PLANNING TODAY FOR TOMORROW

A child with disabilities requires special care now and in the future, but because there is so much to handle in the here and now, many parents and caregivers put off proper planning. They say, Ill do it tomorrow, and before you know it many tomorrows have passed, the future is here, and little or no planning has occurred. Now what? How are clothing expenses going to be paid? Where will a family find affordable housing with supportive services for their loved one with special needs? What transportation is available? How does one put in place a care plan that will provide a full and rewarding life, yet still provide the safety net that needs to be in place? These are all important questions that need to be answered when a child is younger, rather than when he or she transitions into adulthood or when a parent/guardian passes away.

From education and housing to work and recreation, it can be overwhelming to think about all that needs to be done to develop a plan, making sure every aspect of life is covered. But if you take it one step at a time, it will get done. The result will be a comprehensive future care plan.

But you must stay committed to a timetable and persevere until you have a future care plan.

(Prepare for transition to AdulthoodAssessOrganizeDocument Important InformationFind what services are availableExplore Legal OptionsSteps to Develop a Future Care Plan)

85

Step One: Assess

Make an honest assessment of future care needs in light of the entire familys make-up and financial situation.

Step Four: Find out what services are available

Tap into Government Services

Government benefits may make up a large part of the required financial support for individuals with special needs, especially as they graduate into adulthood. Some parents are hesitant to tap into them, but they are essential for everything - from housing to healthcare to job coaching. Identify social service, community, and government programs that will enhance and support the future care plan, including school, recreation, specialized doctors, and even research protocols. Parents then can match up these needs with available government funding such as Supplemental Security Income (SSI) and Medicaid. With housing and healthcare costs subsidized, parents will then need to reach into their pocket for such items as clothing, DVDs, recreational fees, and expenses over and above what the government programs will pay.

Step Two: Organize

Organize and identify all life needs for your loved one with developmental disabilities, including a quality living environment, educational supports, medical needs and wellness program, and recreational activities based on the childs ability to support himself or herself in the future. The family develops a vision of what they see for the individual in the different stages of his or her life.

Step Three: Explore Legal Options

Legal considerations are an important part of the process. Certain legal documents are critical and can assist in speeding up or slowing down care for your loved one. As a parent, consider guardianship and a special needs trust as part of an estate plan. Finding an attorney who understands the specifics of drafting these types of documents is important. But before seeing an attorney, think through carefully all of the legal decisions that have to be made. Many families see an attorney for an initial consultation but never finish their estate plan because the decisions they need to make feel too daunting. Some parents have a hard time naming a family member or friend as a guardian to look after their child or a trustee to manage money matters if they die. Its also hard for them to grasp how much money to leave to their child with special needs for present and future care. Many times, parents cant decide how to best divide up their estate between their family member with special needs and the other children. If these decisions are made prior to the initial meeting with an attorney, it will help to keep the process moving, and you will see a future care plan come to fruition.

Step Five: Document Important Information

It is important that you document the individuals likes and dislikes, routines, and habits, so others can continue building your childs abilities and self-esteem. This information is key information required by teachers, camp counselors, caregivers, as well as future guardians. This step is one most often put off by parents because it can be time consuming, but this information can make a big difference in the future quality of life for your loved one. When this document is prepared in connection with your estate plan, it is referred to as a Letter of Intent. It allows you to give important information about your child to the Trustee of his or her Special Needs Trust.

Step 6: Prepare for the transition to

Adulthood

Once your child leaves school they no longer fall under the protection of state-mandated educational benefits, which typically end at age 21 or 22. They now need your help in finding a place to live, work, and play, in addition to seeking out transportation support. In the past, parents counted on the school on their own. The amount of research that is needed to find the right programs can be overwhelming. The best way to ease into this period of life is to develop a network of professionals to share important information, and, of course, plan early. Develop these relationships when your child is in his/her teenage years. Keep a binder with resources and support groups in your area. It should be an ongoing process throughout your childs lifetime.

( Steps to Develop a Future Care Plan)

EDUCATION SERVICES PLANNING

Determine how much assistance your child will need as they leave school.

I.E.P. Goals

Are they preparing your son or daughter for the next steps?

What Community Based Skill Instruction has your son or daughter participated in?

What transportation issues are addressed?

Have you explored living arrangements after they leave school?

Have you and your son or daughter received information about transitioning to community agencies?

What records should I keep?

I.E.P. for the past two years

Psychological information (IQ)

Notice and Eligibility Decisions Regarding Special Education Services (3 year re-evaluation report)

Summary of Academic Achievement and Functional Performance (SOP): This is completed at the end of the students operating year. It includes: Transitional Goal Progress Report, Summary of Progress and Accommodations, and student input/comments.

Transitional Stages

Age 14 or 8th Grade

Consider Long Term Goals for Living, Working, and Community Inclusion

Educational Considerations

Consider Prioritizing Functional vs. Academic Goals for Transition

Financial and Legal Considerations

Special Needs Trust

Legal Guardianship

Health Coverage

Covered under familys health insurance

Medicaid benefits based on family eligibility

Social Security

Social Security benefits based on family (income) eligibility

Age 16 or 10th Grade

Work Experience in the community should begin in earnest

Consider involvement in Vocational Rehabilitation as a partner in the IEP Team (Application for activation and evaluating if appropriate)

Begin discussing a plan for Adult Medical Care with Appropriate Providers

Establish Eligibility for MR/DD Waiver (apply to be placed on waiting list)

Begin visits and discussion with potential service providers

Obtain Non-Drivers Identification Card

Health Coverage

Covered under family health insurance

Medicaid benefits based on family eligibility

Social Security

Benefits based on family (income) eligibility

Age 18 or 12th Grade

Education

Option to exit high school or continue to explore different opportunities to have work experience up to age 21

The Alabama Code states that children with disabilities who have not earned an Alabama High School Diploma and who have not reached their twenty-first birthday by August 1 are entitled to services up to age 21, even if it means that instruction is provided in excess of 12 years. A child who turns 21 on or after August 1 is entitled to begin and complete the school years. This went into effect beginning July 31, 2008.

Financial and Legal Considerations

Obtain Special Needs Trust

In preparation for age of majority (19) prepare for Legal Guardianship

Employment

Possible participation in Supportive Employment (through ADRS referral, also network with friends and family members to look for employment opportunities after high school)

If employment is not an option, look into leisure and/or volunteer opportunities

Visit potential service providers

Update eligibility on JCIDDA waiting list

Health Insurance

Contact family health insurance about coverage

Medicaid benefits based on individual assets

Social Security

Social Security Age 18 redetermination

Apply for Social Security

Social Security benefits based on individuals assets

Age 21

Education

End of coverage under IDEA

Health Care

Transfer to services provided by Adult Health Provider

Health Coverage

Medical benefits based on individuals assets

Contact the familys health insurance about coverage as adult disabled child

Social Security

Social Security benefits based on individuals assets

Contact 310 about need for services through the MR Waiver/ update criticality with JCIDDA

Explore Transportation Alternatives

Clastran, Max (VIP)

EDUCATION

Schools

List the schools your child has attended at various ages of the level of education completed in each program. Include early intervention, day care, and transitional program.

____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Current Programs

List the specific programs, schools, and teachers your son or daughter has now. Include addresses and phone numbers.

____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

EMPLOYMENT PLANNING

Creating a Path to Employment

Choosing Employment as a Long-Term Goal

CREATING A PATH TO EMPLOYMENT

Start Early

Starting early is a key component to your childs future success. Start by exploring the work world together and conveying your expectations that he/she can and will work when he/she grows up. Provide opportunities for your child to gain early work experience through volunteer work in your community. Web sites such as Career Voyages (www.careervoyages.gov) and The Office of Disability Employment Policys Youth Page (www.dol.gov/odep/categories/youth/career.htm) are useful when exploring career options.

Promote Education

Keep your child engaged in classroom activities. When parents expect their children with disabilities to continue their education beyond high school, the children tend to receive better grades than their peers whose parents do not have these expectations. In addition to the basic skills your child learns in the classroom, it is important that the child also learns how and when to tell others about any accommodations he or she may need.

Encourage Work-Based Learning Experiences

Schools and community-based organizations may offer internships, job-shadowing, and mentoring opportunities that focus on employment. While postsecondary education is important, it is also important to remember that it is not the only gateway to well-paying jobs. Vocational education classes can provide an alternate route for exposing young people with disabilities to careers and preparing them for work.

Create Leadership Opportunities

Encourage your child to connect with mentoring activities designed to establish strong relationships with other adults and peers. Encourage your child to become a mentor to younger youth. Participating in sports, student government, chorus, or volunteer groups can also build leadership skills. There are also a few leadership organizations specifically focused on youth with disabilities:

Kids as Self-Advocates (http:/www.fvkasa.org/)

The National Youth Leadership Network (www.nyln.org)

The National Consortium on Leadership & Disability for Youth

Set Goals

Teach your child how to set goals and work towards achieving them. Start small and work toward larger goals. With an older child, goal setting might relate to entering a chosen field.

Develop Social Skills

Friendships play a key part in youth development. Through the day-to-day activities that accompany making and maintaining friendships, you will be assisting your child in developing the ability to interact and get along with others, another essential skill employers look for and value in an employee.

Listen to the ideas of experts--teachers, medical staff or community providers. Know in the end, however, that you are the one who knows your child best. Share experts input with your child, and, particularly as your child gets older, involve your child in any decision-making that affects him or her.

Additional resources for parents of children with disabilities:

Office of Disability Employment Policy (http://www.dol.gov/odep)

Office of Disability Employment Policy Guideposts to Success: (www.dol.gov/odep/categories/youth)

DisabilityInfo.gov (http://www.disabilityinfo.gov/)

The Job Accommodations Network (JAN) (http://www.jan/wvu.edu/)

PACER Center: (www.pacer.org)

CHOOSING EMPLOYMENT

AS A LONG-TERM GOAL

At some point toward the end of Middle School and before High School your son or daughter should begin thinking about what they might want to do when school is over. For some students, high school will end at the age of 18 but for others they may elect to wait until 21 to graduate. This decision concerning future goals will impact what classes your student should take once they begin high school.

By the age of 14 most students will include career plans in their IEP/transition team meeting. This may include community experiences, development of employment and other adult living objectives, and the need for daily living skills and/or a functional vocational evaluation. If your student is interested in obtaining a job post-high school or even while in high school, now is the time to begin laying the ground work for that point of their transition.

The Alabama Department of Rehabilitative Services (ADRS) is actively involved in the transition of students with disabilities from school to post-school activities. Each high school is assigned a Vocational Rehabilitation Services (VRS) counselor to act as transition counselor. The counselor visits the school regularly to meet with teachers and guidance counselors to receive referrals of students with disabilities who need rehabilitation services. The counselor meets with the student and the parents to explain the availability and range of rehabilitation services. Once eligibility has been determined, steps are taken to determine your students needs and to establish a vocational goal.

Eligibility To become eligible for vocational rehabilitation services:

Your son or daughter must have a physical or mental disability

His or her disability must prevent them from getting and keeping a job

He or she must need VR services in order to get a job

He or she is presumed eligible if they are a recipient of Supplemental Security Income (SSI) or a beneficiary of Social Security Disability Insurance (SSDI) payments and intend to get a paying job

In most cases eligibility will be determined by a rehabilitation counselor within 60 days of the application.

The transition counselor works with the student until graduation. When the student leaves high school the next phase in the process begins. This may include college, training, vocational training, community rehabilitative services or employment, depending on the students needs and desires.

There are 4 types of employment settings that your student may choose from. They are:

1. Competitive Employment is employment in businesses or agencies in the community. Minimum wage or better will be provided and it may or may not offer benefits. The services of a job trainer may be needed for a short time to assist with training and adjustment to the work site.

2. Supported Employment is employment in integrated business settings in the community for individuals with more involved disabilities. The individual with the disability will receive the assistance of a job trainer or job coach during the training period and may receive on-going support from the job coach to maintain employment. This type of employment will pay minimum wage or better. Benefits will vary depending on the job site.

3. Sheltered Employment is employment in sheltered workshops for individuals with a disability. It is a segregated work setting for individuals who require a more intense level of supervision. Sheltered employees are paid below minimum wage. Most workshops have one to four year waiting lists and require that the individual be on the Medicaid waiver.

4. Day/work activity program is a supervised day program for individuals with disabilities. Most activities are recreational or instructional in nature. There is no pay involved. Many day activity programs have a one to four year waiting list.

ADRS will assist your child if he or she is eligible and chooses either competitive employment or supported employment. VRS places substantial emphasis on transition from high school to work. The transition teams assist junior and senior high school students with disabilities in preparing for employment and community living. VRS counselors work with students, parents, special education teachers, coordinators and other school personnel throughout the state to provide assistance to students in developing career goals and obtaining on-the-job training opportunities.

Supported Employment provides community-based assessments, job development, job coaching and extended support to meet the employment needs of individuals with the most severe disabilities. Individualized services are provided to match individual interests, skills and abilities with an appropriate job in the community. A job coach works closely with each individual to teach the job tasks. To ensure long-term job stability, the individuals rehabilitation counselor arranges for the employee and employer to receive continued supports for the duration of the employment.

Supported services in Alabama are driven by the needs of the individuals they serve. Choice allows consumers a variety of experiences, options and support to achieve their career goals. Individuals are free to choose their job coach and their service provider.

Your students IEP is an excellent place/tool to plan out his or her future goals and the steps necessary to reach those goals. The following is a timeline with recommended steps in that process.

Grade Level

Tasks to be Completed

Middle School/Junior High School

Begin assessing your students career interests

Discuss diploma/exit options

Eighth Grade

Explore careers of interest

Select courses needed to meet transition goals

Select highest most appropriate diploma/exit option by the end of the year

Ninth Grade through Eleventh Grade

Assess students interests, strengths and needs

Review and maintain documentation of transition services

Discuss and explore interests in IEP

Discuss and review employment or post secondary education goals

Develop agency links or contacts

Transition services must begin no later than the first IEP to be in effect when the student turns 16

Twelfth Grade

Complete the Summary of Academic Achievement and Functional Performance (SOP). Every student who exits school with a diploma or who will be attending school until the age of 21 should complete an SOP, including all other students who will leave with a certificate or an Alabama Occupational Diploma.

Document, document, document! Including all accomplishments and progress.

Continue working with the transition counselor to ensure that skills and training needed for post-high school employment are taking place.

Take advantage of all available school and community-based work training experiences

Apply for employment or supported employment services through Vocational Rehabilitation or other adult services agency.

Seek and maintain employment (volunteer or paid). Any job experience will increase your students confidence and assist in gaining future employment after high school

Technical Assistance: Most individuals with disabilities in todays workplace do not need accommodations, but for those who do VRS can provide cost-effective solutions. VRS can determine what the needs of the individual are and then work with the employer to ensure that they are in place.

For more information visit:

www.rehab.state.al.us

www.al-apse.org

CONTACT LOG

For

EMPLOYMENT

Organization _______________________________________________________

Telephone____________________E-Mail _____________________________

Contact Date

Name of Person Contacted

Notes

Follow-up Date

HEALTH CARE TRANSITION

Planning for Your Childs Health Care Transition

Health History

Visit to Doctor

Medication Listing

Planning for Your Childs Health Care Transition

Caring for your child with special health care needs presents many challenges. As your child gets older, you will be facing many changes in obtaining health care. One important change that will happen over the next few years is saying good-bye to your pediatrician and going to see doctors who take care of adults.

At What Age Should My Child begin to use a Doctor Who Treats Adults?

There is no precise time that is right for every child. Most disability experts recommend beginning the discussion somewhere between the ages of 15 and 17. The best person to advise you concerning this will be your childs pediatrician. Not all pediatricians stop seeing children at 21 years of age. This may depend on your childs situation and your pediatricians practice. Remember that regardless of how scary the prospect of a new medical provider may be, as a child ages sometimes in order to get the best, most appropriate care your child will need to transition to an adult care provider. Your childs pediatrician will be able to advise you as to when to begin making this transition and should also be able to recommend physicians who see adults with the kinds of special needs your child has.

Choosing a New Medical Care Provider

When you begin to have the discussion concerning a new physician there are some very important topics that should be discussed or considered. Some of them include:

What type of doctor should I look for? Specialist or Family Practice? Your child may already have several specialists and so you may think you do not need to add another doctor to the list. However, most would agree that your child needs a medical home a physician that can be the hub around which your childs care is planned and coordinated. Especially in complicated scenarios it is good to have one doctor who knows all the ins and outs of your childs care.

What is the size of the practice?

What is the climate of the practice? Will your child be able to receive individualized care from a physician who is able to spend time answering questions and discussing your concerns?

Does your pediatrician know of other patients with similar needs that have had a good experience with a particular physician?

Do they have experience taking care of people with disabilities, and especially the specific types of problems your child has or may be prone to having?

What is their affiliation with clinics or hospitals?

What types of health insurance do they accept?

Will my child need a referral?

Will they be open to an interview to discuss my childs needs before we make a decision?

Saying Good-bye

It will be hard to leave the doctors and nurses you have known for a long time. You will probably miss seeing these individuals who have worked closely with you and your family. As part of saying good-bye, ask if it is okay to keep in touch after your son or daughter is no longer a patient. Most pediatric providers enjoy hearing about how their patients are doing after they graduate from their practice. You can send an e-mail, letter, or drop in for a personal visit.

Health History

Name ____________________________________ Date Completed ______________________

Current Medical Conditions

Current Medical Condition

Physician Responsible

Treatment (List medicines below with dosage including over the counter medicine (e.g. Advil)

(It may be helpful to attach a copy of the Medication Listing found in the attachments under Additional Resources.)

Drug Allergies (list)___________________________________________________________

___________________________________________________________

___________________________________________________________

___________________________________________________________

Food Allergies (list)___________________________________________________________

___________________________________________________________

___________________________________________________________

Allergies to things in Nature______________________________________________________

___________________________________________________________

___________________________________________________________

Immunizations up to date_________________________________________________________

Date of last Tetanus shot _________________________________________________________

Birth History

Birth Weight_____________________________

Born Early ________ Yes __________ No

If yes, how many weeks early? ____________________________________________________

What problems at birth? __________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Past History

List any serious illnesses and any injuries that required hospitalization.

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Medical ConditionDate

______________________________________________________________________

______________________________________________________________________

______________________________________________________________________

______________________________________________________________________

Health History

Condition

Yes

No

Anemic

Asthma

Blood Transfusion

Constipation

Diabetes

Ear Infections

Eating Problems

Health Disease

Hepatitis

Seizures (Epilepsy)

If the answer is yes to any of the above conditions, please make additional comments about the condition. For individuals with seizures, describe the seizures and include how often the seizure occurs, how long they last, and last time occurred.

____________________________________________________________________________________________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Family Health History

Has any relative had any of the following?

Condition

Relative

Anemic

Breast Cancer

Cancer (other)

Diabetes

Heart Attack

High Blood Pressure

High Cholesterol

Seizures

Sickle Cell Anemia

Stroke

Thyroid Problems

Tuberculosis

Present Health Care Provider

List the name, address, and telephone number of any doctor or other health care provider who has the latest medical records about your childs health condition (e.g. Pediatrician, Dentist, Occupational/Physical Therapist, Nutritionist, etc.)

Name

Specialty

Address

Telephone

Visit to Doctor

Doctor: ______________________ Address: ____________________________

My appointment is at: __________________________________________________________________

Purpose of visit

Its my first visit

I am getting a check up

I am following up

Since last visit this has happened: __________________________________________________________________

__________________________________________________________________

__________________________________________________________________

Things I want to ask the doctor are:

________________________________________________________

_________________________________________________________

_________________________________________________________

The doctor said: __________________________________________________________________

__________________________________________________________________

__________________________________________________________________

Whats next: _______________________________________________________

__________________________________________________________________

__________________________________________________________________

Special instructions: __________________________________________________________________

__________________________________________________________________

__________________________________________________________________

__________________________________________________________________

Follow Up Visit: Yes No When?: _____________________________________________

Referral: ______________________________________________________________________

Medication Listing

Fill in the information to keep track of your childs medications.

Name: ________________________________________________

Immunization Record

Tetanus

Flu Vaccine(s)

Pneumonia

Hepatitis

Other

Other

Allergies:

Medication:

Dosage:

Day & Time(s) Taken

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

Morning

Morning

Morning

Morning

Morning

Morning

Morning

Noon

Noon

Noon

Noon

Noon

Noon

Noon

Evening

Evening

Evening

Evening

Evening

Evening

Evening

________

________

________

________

________

________

________

Special Instructions

Taken with Food

Empty Stomach

With Water

Other:

Notes:

Medication:

Dosage:

Day & Time(s) Taken

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

Morning

Morning

Morning

Morning

Morning

Morning

Morning

Noon

Noon

Noon

Noon

Noon

Noon

Noon

Evening

Evening

Evening

Evening

Evening

Evening

Evening

________

________

________

________

________

________

________

Special Instructions

Taken with Food

Empty Stomach

With Water

Other:

Notes:

Medication:

Dosage:

Day & Time(s) Taken

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

Morning

Morning

Morning

Morning

Morning

Morning

Morning

Noon

Noon

Noon

Noon

Noon

Noon

Noon

Evening

Evening

Evening

Evening

Evening

Evening

Evening

________

________

________

________

________

________

________

Special Instructions

Taken with Food

Empty Stomach

With Water

Other:

Notes:

Medication:

Dosage:

Day & Time(s) Taken

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

Morning

Morning

Morning

Morning

Morning

Morning

Morning

Noon

Noon

Noon

Noon

Noon

Noon

Noon

Evening

Evening

Evening

Evening

Evening

Evening

Evening

________

________

________

________

________

________

________

Special Instructions

Taken with Food

Empty Stomach

With Water

Other:

Notes:

Medication:

Dosage:

Day & Time(s) Taken

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

Morning

Morning

Morning

Morning

Morning

Morning

Morning

Noon

Noon

Noon

Noon

Noon

Noon

Noon

Evening

Evening

Evening

Evening

Evening

Evening

Evening

________

________

________

________

________

________

________

Special Instructions

Taken with Food

Empty Stomach

With Water

Other:

Notes:

NEEDED DOCUMENTS

*Before you begin looking for services- be sure to have these documents!

1. Information Sheet

Basic information regarding your child

2. Emergency Medical Form

You will need to know this in case of an emergency

3. Family and Special Friends Information

Make as many copies as necessary

4. Non-Drivers License

Important to have available for travel or other occasions

5. Social Security

If your child does not already have Social Security benefits, apply through Social Security for Supplemental Security Income (SSI).In Alabama, if you get SSI benefits, you are automatically eligible for Medicaid Coverage.

6. Family Health Insurance

The upper age limit for coverage of dependent children under employer-board health plans varies. While coverage typically ends when a child turns 19, some policies allow young adults to continue to be covered if they are disabled. Read your family health insurance policy carefully and understand your options. To be sure that coverage continues, you should contact your insurance company or employer four or six months before your child turns 19, to tell them that you have a dependent adult child and you want coverage for this child to continue.

7. Individualized Education Plan (IEP)

Including goals, assessments, therapy evaluations

8. Birth Certificate

9. Psychological Evaluation

10. Medical Records from all your Health Care Professionals

-Primary Physician/ Pediatrician

-Vision

-Dental

-Neurologist

11. Letter of Eligibility from Social Security, Copy of Insurance Card or Medicaid Card

Information Sheet

Complete Name __________________________________________________________________

Name likes to be called __________________________________________________________________

Date of Birth

__________________________________________________________________

Social Security Number __________________________________________________________________

Medicaid Number __________________________________________________________________

Medicare Number __________________________________________________________________

Insurance Name __________________________________________________________________

Insurance Number __________________________________________________________________

Complete Address __________________________________________________________________

__________________________________________________________________

Diagnosis ________________________________________________

Phone contact information:

Home___________________

Work___________________

Cell_____________________

Emergency Medical Form

Name: ____________________________________________Birthdate: ____________

Address: ___________________________________________Phone: ______________

Mother/Guardian Name: ____________________________________

Home Phone: __________________ Work: ____________________ Cell: ________________

Father/Guardian Name: _____________________________________

Home Phone: __________________ Work: ____________________ Cell: ________________

Medical Information

Please list all of childs health care providers.

TypeNamePhone

Pediatrician/Clinic____________________________________________________

Dentist____________________________________________________

Eye____________________________________________________

Neurologist____________________________________________________

Therapist____________________________________________________

Other _________________________________________________________________

Preferred Hospital:______________________________________ Phone: _______________

Health Insurance: _____________________ Group #_______________ Policy #_____________

Medicaid Yes No Medicaid Number: _______________________________________

Primary/Patient First Physician: ____________________________ Phone: ________________

List medications (name and reason): ________________________________________________

______________________________________________________________________________

Please list any medical information concerning your child that would be necessary for staff to know (example: allergies, dietary restrictions, medications): _____________________________

______________________________________________________________________________

Contact in Case of Emergency (List three friends or relatives)

Persons whom should be contacted in the event of a medical or other emergency (Please list only persons who can respond within 30 minutes.)

Name: _________________________________________ Relationship: ___________________

Address: ______________________________________________________________________

Home Phone:__________________ Work Phone:____________ Cell/Beeper:_______________

Name: _________________________________________ Relationship: ___________________

Address: ______________________________________________________________________

Home Phone:__________________ Work Phone:____________ Cell/Beeper:_______________

Name: _________________________________________ Relationship: ___________________

Address: ______________________________________________________________________

Home Phone:__________________ Work Phone:____________ Cell/Beeper:_______________

Information Family and Special Friends

List special friends and relatives that your child knows and likes. Describe the relationship. These people will play an invaluable role in planning for your child.

Name __________________________________________________________________

Relationship to person with a disability __________________________________________________________________

Address __________________________________________________________________

__________________________________________________________________

Phone:

Home_________________ Work_________________Cell________________

Comments on relationship to individual with disability

______________________________________________________________________________________________________________________________________________________________________________________________________

__________________________________________________________________

__________________________________________________________________

__________________________________________________________________

Non-Drivers License

It is important to obtain some form of identification for your son or daughter. This would be important if your child is traveling or applying for a job. Generally, most businesses and other places will accept a non-driver license. A photo I.D. can be obtained at one of the locations of the Alabama Department of Public Safety where you get your driver license. A citizen of Alabama may apply to the local driver license examiner for a non-driver identification card. The same degree of proof of identification required of applicants for driver licenses in the state shall be required of applicants for non-driver identification cards. Identification cards are issued to applicants who do not physically qualify for a driver license, do not have a current Alabama driver license, or who wish to discontinue driving and surrender their license. The non-driver identification card bears a number and the name, date of birth, address, description of the person, and a color photo. The Identification Cards are available wherever driver licenses are available. Make sure you go to an office that issues drivers licenses. The procedure to follow to obtain a non-drivers license is the same as applying for a driver license. (Tip: Plan to be there early and prepared to stand in line and wait in line with all those who are there for a drivers license. Everyone takes a number and is called on a first come, first served basis. These non-driver licenses are for a 4 year period just like the driver license. Call ahead to ask which forms of identification they will accept before issuing a non-driver license. If you do not have the required identification, they will not issue a license or photo I.D.)

LEGAL TRANSITION PLANNING

Legal Guardianship

* Guardianships for Adults with Disabilities

Establishing a Special Needs Trust

How to Find the Right Attorney

Legal Guardianship

Who does this mean? Did you know that after your child turns 18 that you (parents) no longer have automatic access to your childs personal health information? Once your child turns 18 years old, health care providers are required by law to respect the right to confidentiality of personal health information. Health care providers cannot provide this information to parents unless they have written permission to do so. This situation presents both opportunities and challenges.

The right to privacy of personal health information can help to prompt you and your child to discuss the changes in responsibility that will occur on your childs 18th birthday. This discussion can make clear the limitations that parents face and how a young adult at age 18 becomes the responsible person for medical decision-making.

For some young adults whose ability to make informed decisions is diminished, informal supports may be sufficient. This can involve a network of family and friends providing informal support and guidance. It is important to recognize these informal networks must still operate within privacy laws. Steps for developing and maintaining such an informal network include signing release information forms so that family members will have access to medical information if the young adult so chooses.

Other young adults whose ability to make informed decisions is more limited, may need the formal supports that are provided through guardianship. Guardianship is a legal process that takes time and money and involves submitting a formal legal petition to the county probate court. Guardianship is a legal, rather than a medical determination, and involves the courts formally declaring that an individual is incompetent and unable to make certain decisions for themselves, and appoints another adult or adults to make such decisions. In many cases, the appointed guardian is a parent, sibling, or other family member. However, a trusted friend or staff of a public guardianship agency can also serve in this role.

In some cases a child may also need to have a conservator appointed. Similar to a guardian, a conservator is a person that the court has appointed to handle the childs business and financial affairs. The process of becoming appointed is complex and may involve considerable expense. A formal legal petition is required plus the person appointed must be bonded. Accounting to the court of all the funds received and spent is required, every three years.

The issue of guardianship and other legal supports is a complicated one. Some advocates believe that guardianship denies an adult with a disability his or her civil rights. Others believe that guardianship, or other legal supports, are sometimes necessary to assure the safety and well-being of some adults with disabilities. Parents and the professionals involved in a young persons care want young adults to be independent and self-sufficient, but at the same time, want them to be safe. You may want to discuss this with your childs physician and your attorney.

GUARDIANSHIPS FOR

ADULTS WITH DISABILTIES

It is no secret that family members who care for an individual with a disability face a unique set of challenges. If the disability is severe enough, assisting a family member with a disability involves having input into that persons day-to-day living and health care decisions. However, for parents of children with disabilities, the legal landscape drastically changes when their child turns age nineteen (19). This is because, at age 19, a child legally becomes an adult under Alabama law and then the child is free to make his of her own decisions. Conversely, the adult childs parents no longer have a legal obligation to support their child, and are no longer required to be consulted about decisions concerning their child's welfare, even if the child does not have the ability to make informed decisions. Unless the child's ability to make decisions is brought into question, the law assumes that an adult is perfectly capable of handling his or her own affairs.

Federal patient confidentiality laws have become increasingly strict about what information (if any) a doctor or other health care professional can share with someone who is not the patient. Because of this, parents are often routinely excluded from conversations involving their adult childs medical treatment or care. If that child is unable to make informed medical decisions on his or her own behalf, this poses a very serious concern. With the parents left out, an adult child with a disability often has no one to be able to assist him or her in these important treatment decisions.

We are often asked whether parents of an adult child with a disability need to be appointed as their childs legal Guardian. Our response used to be, not unless you are having a problem communicating with medical care providers for your child. However, in light of the situations we continue to see caused by new patient confidentiality laws, we now maintain that being appointed as your childs legal Guardian can be particularly helpful to avoid any lapse in communication with health care professionals.

In Alabama, the roles of caring for a person in need of protection have been separated into two parts: a Guardian and a Conservator. A Guardian is in charge of the care of the person, meaning that the Guardian is in charge of making decisions about where an individual will live, day-to-day living decisions, and medical/health care decisions. By contrast, a Conservator is in charge of an individuals property, meaning that the Conservator is in charge of handling an individuals finances when they are not able to do so for themselves. Guardians and Conservators are appointed by the Probate Court.

It seems not that long ago that parents usually expected to outlive their children with developmental disabilities, especially those with disabilities that commonly have physical impairments as well. In todays world of improved health care, that is no longer the case. Individuals with Down Syndrome are regularly reported living into their 60s now, whereas only a decade ago, 35 to 40 was considered a maximum life expectancy.

Even if a parent has never had a problem communicating with a health care provider about his or her child, and there is not a need for a formal Guardianship of the child during the parents lifetime, there will be an immediate need for a Guardian to be appointed at the parents death. It is critical that a parent of a child with a developmental disability have in place a Will that nominates a Guardian for the child at the parents death.

Sometimes this day comes even sooner if the parent develops dementia or becomes unable to accompany the child to medical appointments. Once this situation develops, it is important to have a Guardian appointed as soon as reasonably possible. While a hospital is required to provide emergency care for the individual, the same is not true for routine care for a chronic illness, such as allergies, diabetes, infections or other common health problems of adults with disabilities. Thus, the parent should also have in place a Durable Power of Attorney that contains a nomination of a Guardian for his or her adult child should the parent no longer be able to care for the child While the Probate Court is still required to appoint a Guardian ad litem and a Court Representative to make sure the nomination is appropriate and in the childs best interest, the written instruction of the parent carries priority for the Courts decision. A sibling of the child with a disability often becomes the legal Guardian, even before the parent passes away.

When it comes to providing assistance for an adult with special needs, being proactive rather than reactive pays benefits. Consider becoming your adult childs legal Guardian to avoid any chance that your childs health concerns would not be made known to you.

BY: KATHERINE N. BARR AND CATHERINE L. WILSON

CONTACT LOG

GUARDIANSHIP

Organization _______________________________________________________

Telephone____________________E-Mail _____________________________

Contact Date

Name of Person Contacted

Notes

Follow-up Date

Establishing a Special Needs Trust

(An inheritance Can Jeopardize the Government benefits Received by Individuals With Special NeedsBy exceeding specific income or resource levels, an inheritance can disrupt or eliminate entirely the state and federal benefits that are received by an individual with a disability, or other special needs. The same may be true if the beneficiary of the benefits receives a financial gift (or gift of property that can be sold for cash), wins a lottery, or receives a legal damages award or settlement. Any number of financial windfalls can result in the reduction or loss of government benefits. )A major factor to consider is the need to preserve eligibility for governmental benefits for your child. Government programs are necessary for many people with disabilities.

Long-term care is expensive and can rapidly deplete a familys finances. The child with

a disability may not be able to work and obtain group healthcare coverage. Often she or

he cannot purchase private healthcare insurance either. In such cases, preserving

eligibility for Medicaid, which provides for comprehensive medical and long-term care

coverage, is vital.

The key to government benefits for a person with a disability often comes with

qualification for Supplemental Security Income (SSI). In most states, individuals who are

eligible for SSI automatically receive full Medicaid benefits. Of equal importance,

admittance to many group homes and meaningful work programs is often restricted to

SSI-eligible individuals. Indeed, a full support program, including federal housing benefits,

social workers, and educational programs, may sometimes only be available to individuals

who qualify for SSI. (But note: In most states, a child who loses SSI upon the death or

retirement of a parent, and instead receives Social Security Disability, may still be eligible

to retain Medicaid under the states disabled adult child program (DAC) if the childs

resources do not exceed a minimal threshold.) A person with a disability must meet severe

financial resource and income tests to qualify for SSI. An inheritance of as little as $2,000

(whether outright or in a conventional trust or custodial account) may cut a child off from

SSI eligibility or DAC and other needed programs until that amount is exhausted.

The Special Needs Trust Solution

The solution for most families is a special needs trust. This trust, which can be

set up under a will or as a separate document, functions to supplement (not replace)

government benefits for which the child may otherwise be eligible.

The wording of the special needs trust is very important. For example, language

requiring the trustee to provide for the childs support, maintenance, and welfare may

cause the assets of the trust to count as a resource for benefit eligibility purposes. The Social

Security Administration and Medicaid generally will view a trust with those words as a

primary support fund for the child and will insist that the trust monies be depleted before

the child receives government support.

A carefully drafted special needs trust recognizes that the childs government

benefits are primary and directs the trustee to provide supplemental benefits for the childs

special needs. The trust defines special needs as those items that are not provided through

public or private assistance. The trust may contain a list of examples of special needs

tailored to the trust beneficiary, such as payment for companions, special education

programs, enrichment opportunities, transportation (including vehicle purchase), electronic

equipment, supplemental medical and dental care, flexible housing options, pets, adaptive

equipment, clothing, and personal expenses.

The beneficiary of the special needs trust must not have any control over the trust.

All discretion concerning payments resides with the Trustee. The document also may

specify that the trustee has the authority to obtain a court ruling that the trust is exempt for eligibility purposes, and it should allow the trustee to amend its terms to comply with future changes in the law, a change of circumstances of the beneficiary, or to change trustees. In addition, the trust should provide a continuity of management that would include either a corporate trustee or a sufficient line-up of individual trustees who are capable of providing financial management as well as guidance regarding the beneficiarys personal care and enrichment needs.

CONTACT LOG

For

SPECIAL NEEDS TRUST

Organization _______________________________________________________

Telephone____________________E-Mail _____________________________

Contact Date

Name of Person Contacted

Notes

Follow-up Date

Letter of Intent

This document provides direction for the person who will care for a person with special needs in the event both parents die first. Although it is not legally binding, it is intended as a working document for the future caregiver to follow. This letter details the disabled persons history, daily needs, likes and dislikes, and specific wishes and expectations as they relate to the persons future.

Date completed ______________________________Last update _________________________

Name of dependent _________________________________

Nickname _________________________

Height _____Weight _____Blood type _____Social Security Number ______________________________

Shoe size __________Shirt size __________Pant size __________

Date and place of birth ______________________________________________________________________________

Emergency contact ______________________________________________________________________________

NAMEADDRESSCITY/STATE/ZIPPHONE NUMBER

Diagnosis ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Physical and mental status

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Physicians names and phone numbers

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Medications currently being taken and storage location

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Assistive/mobility devices (date/place purchased, maintenance info)

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Skill levels (bathing, dressing, toileting, sleep routines, travel, cooking, housekeeping, bill paying/money management)

AbilitiesLimitations

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What resources are available to help overcome the limitations listed above?

______________________________________________________________________________

______________________________________________________________________________

[Attach current photo and individualized education plan (IEP)]

Previous behavioral challenges and effective interventions

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Personal history

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Medical history

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Previous medical testing (when, why, where)

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Potential emergency situations and instructions

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Medical Insurance

PROVIDERPOLICY NO.GROUP NO.PLAN PARTICIPANT NAMETYPE/LEVEL OF COVERAGE

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Nutritional profile

Food allergies/restrictions

______________________________________________________________________________

______________________________________________________________________________

Favorite foods ______________________________________________________________________________

______________________________________________________________________________

Food dislikes ______________________________________________________________________________

______________________________________________________________________________

Amount of food portions ______________________________________________________________________________

______________________________________________________________________________

Eating or swallowing problems ______________________________________________________________________________

______________________________________________________________________________

Other important information ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Habits ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Hobbies ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Other interests ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Social/recreational/religious activities ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Favorite things (places to visit, activities, people, pets) ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Dislikes ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Other needs ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Your hopes and dreams for your child ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Are there any specific traditions, beliefs or core values you would like to have carried on or reinforced? ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Where and how would you like your child to live in the future? ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

If the person with special needs could no longer live with you, would he or she be better off living in a group environment or independently? ______________________________________________________________________________

______________________________________________________________________________

EDUCATION

Current or previous educational concerns that need monitoring ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Educational strategies or approaches that have been successful ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Is there a transitional/vocational plan for when your child graduates from high school? ______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Does he or she plan to attend college? No ______ Yes ______

Name of university ______________________

What professional career, if any, would he or she like to pursue? ______________________________________________________________________________

______________________________________________________________________________

IMPORTANT NAMES AND CONTACT INFORMATION

NAME

ADDRESS

PHONE NUMBER

Legal guardian*

Executor of will

Trustee

Co-trustee

Advocate

Insurance/financial representative

Vocational expert

Attorney

Government benefit contact

NAME

ADDRESS

PHONE NUMBER

Caseworker

School or work contact

Current care providers

Primary physician

Secondary physician

Therapists

Other medical providers

Social service organizations

Aides

Other helpers

*Please note: If the dependent is a child and will not be considered legally competent as an adult, the parent or caretaker must apply for guardianship once the child reaches age 18 in order to remain legal guardian.

Family members and close friends

Name, address, phone numberRelationship

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

How to Find the Right Attorney

While there is no shortage of attorneys these days, you may discover that attorneys who are experienced in special needs planning are in short supply. This is not an area to leave to chance. The plans to be set up and documents to be signed will not only impact your legal affairs, but those of generations to come, some of whom may not be able to advocate for themselves.

The first place to look for a qualified special needs attorney is to ask friends, colleagues and other professionals. Word of mouth and positive referrals can be among the best resources for locating an attorney with the skills you need.

Other sources exist as well. The Yellow Pages and the internet will provide thousands of listings for attorneys, but most people find these are not particularly helpful. The information provided in a search of these sources does little more than provide a name and phone number or address. Even attorney rating systems may fail to provide enough information about an attorney's skills in the specific areas of estate planning, disability planning, government benefits, and guardianships, all of which you will need. Sometimes a description of a lawyer or his or her firm may list these practice areas, implying that someone there should be able to draft a special needs trust. It is possible, however, that the attorneys at that firm may have never created such a trust, and have focused their practices on different aspects of these areas. It is important not only to inquire as to the experience of the attorney in the special needs planning area, but to ask specifically if he or she regularly prepares special needs trusts, and if so, what percentage of his or her practice is devoted to this. You want to find one with the majority of his or her practice in this area.

Fortunately, there are several professional organizations for lawyers who concentrate in special needs planning. Here is a listing:

The Special Needs Alliance: This is the only national invitation-only membership organization for lawyers engaged primarily in special needs planning. It is also a non-profit organization. Before being invited to join, members have already gained a reputation for being among the best-qualified special needs lawyers in their communities. Contact information for a member in your state may be obtained by calling toll-free (877) 572-8472, or by visiting the organization's website at www.specialneedsalliance.com.

The Academy of Special Needs Planners: Any lawyer who seeks additional resources or training in the area of special needs can join this national organization, which focuses on practice development and specialized programs. Membership indicates at least a strong interest in the field. More information can be obtained, including the names of individual attorneys in your state who may have joined, at www.specialneedsplanners.com.

The National Academy of Elder Law Attorneys (NAELA): Although the name of this group emphasizes "elder law" rather than special needs, it is a large national organization that any attorney interested in both elder and/or special needs legal issues may join. Often attorneys who want to learn this area of the law begin here. Most of the members of the above-named organizations are also members of this group. Not all NAELA members are experienced in special needs legal planning however, as the primary focus of the organization has been in other areas. It is important to inquire of a NAELA member about his or her experience in special needs planning, as not all NAELA members regularly practice with respect to individuals under age 65. NAELA information is available at www.naela.org or at 703-942-5711.

UNDERSTANDING GOVERNMENT SERVICES/ PROGRAMS

FOR ADULTS WITH DISABILITIES

Social Security Information

Records to Keep/ Obtain for these services

What services are available?

*Day/ Work Programs

*Residential/ Housing Programs

*In-Home Services/ Personal Care

*Transportation

Department of Mental Health/ ADRS Flow Chart

Department of Mental Health/ Waiver Services Waiting List Process

Social Security

Supplemental Security Income (SSI) may be available to your child with a disability. SSI is a monthly cash payment to a person who has a disability that also has low income and limited resources who is age 65 or older, or blind or has a disability. Your child under age 18 can qualify if he or she meets Social Securitys definition of disability for children, and if his or her parents income and accountable resources fall within the eligibility limits. Before the child is 18, the parents income and resources count. After the child turns 18, the parents income and resources do not count, even if the child lives at home. Your local Social Security office can tell you more about your total SSI payment.

(If your childs condition(s) results in marked and severe functional limitations for at least 12 continuous months, Social Security indicates it will find that your child is disabled. But if it does not result in those limitations, or does not last for at least 12 months, Social Security will find that your child is not disabled.)

SSI rules about disability

Your child must meet all of the following requirements

to be considered disabled by Social Security, and therefore

eligible for SSI:

The child must not be working and earning more than $1000 a

month in 2009. (This earnings amount changes every year.) If he or

she is working and earning that much money, Social Security will

find that your child is not disabled.

The child must have a physical or mental condition, or a

combination of conditions, that results in marked and severe

functional limitations. This means that the condition(s) must very

seriously limit your childs activities.

The childs condition(s) must have lasted, or be expected to last,

at least 12 months; or must be expected to result in death.

(If you have any of your childs medical or school records, please bring them with you. This will help speed up the decision on your application.)

Providing information about your childs condition

When you apply for benefits for your child, you will be asked for detailed

information about your childs medical condition and how it affects his

or her ability to function on a daily basis. Social Security also will ask permission permission for the doctors, teachers, therapists and other professionals

who have information about your childs condition to send any

information they may have to prospective providers/ agencies.

What happens next?

Social Security will send all of the information that you provide to the Disability Determination Services in your state. Doctors and other trained staff in that state agency will review the information, and will request your childs medical and school records, and any other information needed to decide if your child is disabled.

If the state agency cannot make a disability decision using only the medical information, school records and other facts it has, it may ask you to take your child for a medical examination or test. Social Security will pay for the exam or test.

Social Security may make immediate SSI payments to your child

It can take three to five months for the state agency to

(If your child has one of the limiting conditions that is expected to disable a child, he or she will get SSI payments right away. However, the state agency may finally decide that your childs disability is not severe enough for SSI. If that happens, you will not have to pay back the SSI payments that your child got.)decide if your child is disabled. However, it considers

certain medical conditions so limiting that they expect any

one of them to disable a child. In these cases, Social Security

makes SSI payments right away and for up to six months while

the state agency decides if your child is disabled.

Following are some of those conditions:

HIV infection

Total blindness

Total deafness

Cerebral palsy

Down syndrome

Muscular dystrophy

Severe mental retardation (child age 7 or older)

Birth weight below 2 pounds, 10 ounces

SSI disability reviews

Once your child starts receiving SSI, the law requires that Social Security must review your childs medical condition from time to time to verify that he or she is still disabled. This review must be done:

At least every three years for children younger than age 18 whose conditions are expected to improve; and

By age 1 for babies who are getting SSI payments because of their low birth weight, unless Social Security determines the childs medical condition is not expected to improve by his or her first birthday and Social Security schedule the review for a later date.

Social Security may perform a disability review even if your childs condition is not expected to improve. When it does a review, you must present evidence that your child is and has been receiving treatment that is considered medically necessary for your childs medical condition.

(For more information, ask for Supplemental Security Income (SSI) (Publication No. 05-11000).)What happens when your child turns 18?

For disability purposes in the SSI program, a child becomes an adult at

age 18, and Social Security uses different medical and nonmedical rules

when deciding if an adult can get SSI disability payments. For example,

Social Security does not count the income and resources of family

members when deciding whether an adult meets the financial limits

for SSI. They count only the adults income and resources. They

also use the disability rules for adults when deciding whether an

adult is disabled.

If your child is already receiving SSI payments, Social Security must review the childs medical condition when he or she turns age 18. It usually does this review during the one-year period that begins on your childs 18th birthday. It is important not to title assets in the name of a child with a disability for this reason. Social Security will use the adult disability rules to decide whether your 18-year old is disabled.

If your child was not eligible for SSI before his or her 18th birthday because you and your spouse had too much income or resources, he or she may become eligible for SSI at age 18.

Social Security Disability Insurance (SSDI) benefits for adults

disabled since childhood

The SSDI program pays benefits to adults who have a disability that began before they became 22 years old. Social Security considers this SSDI benefit as a childs benefit because it is paid on a parents Social Security earnings record.

For a disabled adult to become entitled to this child benefit, one of

his or her parents:

Must be receiving Social Security retirement or disability benefits; or

Must have died and have worked long enough under Social Security.

These benefits also are payable to an adult who received dependents

benefits on a parents Social Security earnings record prior to age 18,

if he or she is disabled at age 18. Social Security makes the disability

(NOTE: You do not need to request information from your childs doctors. Social Security will contact them directly for any reports or information that we need to make a decision about your childs disability.) decision using the disability rules for adults.

Applying for SSI payments or SSDI benefits and how you can help

You can apply for Social Security or SSI payments for your child by

calling Social Security toll-free at 8-800-772-1213 or by visiting your

local Social Security office. If you are a